Remaining Positive in the Face of [Chronic] Illness

Once the battle of being diagnosed with an illness, be it chronic or not, has passed – with elation, fear, and exhaustion – it is not long before the next battle comes.

For me this was “finding my feet”. I spent six weeks or so in hospital over the space of four months, as we sorted out my medications and relieving my symptoms. Once I was on an upward path, everyone began to tell me this little nugget of wisdom:

“You've got to find the positive strength to get through this”

Hear it a few times, you take it on board and try your best to be positive. All of the time. But you forget you are fighting your own body, draining yourself of important and fundamental energy that healthy people just don't need to do or even contemplate doing. And on top of that, you feel somewhat hard pressed to be positive. Even when things go wrong. When your meds start to make you feel worse, you try and ride it out and hope it gets better; you don't want anyone to think you're not being positive about this terrible illness you have.

I tried about five medications in those early days without success. In this period, I hid away from people, quite easy when you're stuck in hospital. On those multiple admissions, my doctors tried hard to figure out what was now causing me a problem, a pain, a side effect; just why I wasn't getting any better. Then I received funding for a biological drug called Humira and it seemed to change everything. Once I could do my own injections at home, I had my disease staged with a MRI scan and I went back to work. This is when the big ‘push’ of practically everyone I saw telling me “how brave I was” and how it was “important I just tried to be happy and remain positive” throughout all my “bad spells”.

I didn't have bad spells.
I didn’t feel particularly brave.
I wasn't happy AT ALL.

This was the start of 2012. I was trying to find out who I was in a time where everyone wanted me to be happy that I was alive and well.
My bad spells were masked by my medication. It helped me a great deal but it didn't fix me. It certainly would never cure me and I still felt awful a great deal of the time.
My bravery? I was utterly heartbroken as I mourned my old, wonderful, normal life that was now just an endless barrage of tests, managing my diet and tracking symptoms. Being in hospital for so long, being so unwell, made me paranoid about when I actually did feel well – Me? Well? Something must be wrong! Ensue panic!

I just wasn't happy at all. I struggled to find my own new identity in being sick. I couldn't deny what I had or the simple fact that I had it, so I sat and thought long and hard about what I wanted to do. What I wanted to be, who I wanted to be. I read books, articles, spoke to other patients, confessed a lot to my counsellor and slowly I came around. But I struggled a great deal – and to a certain extent, still do – with being told to “be happy”. I don't think it's necessarily that simple, nor is it that easy to do. And why can't you have some time to be angry about things, about this type of thing?

It is not easy to be happy all the time. It is incredibly hard and draining to be positive all the time. I appreciate good advice but not when it is being constantly rammed down our throats; from doctors, medical staff, loved ones, it’s all said with that compassion that leaves you feeling grateful, although through gritted teeth. I don't feel as if I can be unhappy about my health. Especially now in my current situation; going through two major surgeries in four months, coming out with an ileostomy and a forever changed digestive system. Let alone how my scars and my actual ostomy makes me feel and look. I can't always be smiling about it. I need to be angry, some times.

So, remaining positive; harder than it seems. More complex than first meets the eye. Not always for the best.
Please, let us be negative and grieve for a while.
Chronically ill people are the strongest and most resilient people I know. I'm sure that's not just down to being positive, they get angry too.
Let us. We always come back to being happy and finding the funny side. Especially when it comes to bowels!

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Hitting the Wall (of Denial and Regret)

I think like most people, I am guilty of living in some denial and regret in certain aspects of my life.

When it comes to a chronic illness, it's just that CHRONIC. It doesn't go away, it can't be cured only treated and those treatments change and sometimes fail. It takes time to become comfortable with what you have, what is wrong with you and how you go about living with it.

I've always embraced my illness. I figured the sooner I accept it, the better I will feel right? I was half right. Whilst I did accept my illness and how it was going to always be in my life, I didn't always like the fact that it was always going to be in my life.  It's difficult to come to terms with that; the long term, chronic part of IBD. Not that any physical aspect of my illness is particular pleasant but it's the people I've met; the resilience, bravery and positive humour they show that keeps me going; it's what I strive to emulate.

So you get use to denying how you feel. You tell your doctors you're happy to go ahead with new treatments when previous ones fail: because your body is immunosuppressed or it's just plain useless or has it in for you. You don't tell them that you're angry that this condition picked you – because it's not genetic, I didn't give myself this illness, ITS NOT MY FREAKING FAULT! – or that you're tired of them trying new treatment after new treatment. You hope and pray every time you do start a new treatment or drug that this is the one that works. That it is the one that gives you some relief from the pain and / or symptoms you're experiencing. You hope you don't live to regret your decision to take harsher and more potent medications.

I don't support this living in denial or the regret of what could have been, I try to live in the moment and remain positive. I did this more than ever during my most recent hospital admission where they ended up taking my colon and giving me a ileostomy. But even with that, I have to talk myself into believe I made the right choices and I am happy with how my life is being lived. For the most part, I convince myself of this. I accept my reality and move on, do all those things a ‘a normal and healthy’ person can do.  But even I have my limits. And my triggers.

One is my actual supply of ostomy appliances. Their smell fresh from the box reminds me of all that I have lost and what I need to do for the rest of my life – change my appliance every other day and empty it 5-6 times a day. It doesn't hold me back but it makes me stop and think, I remember living with a colon for so long it's still very odd to not have it. And once my body is healed from this surgery, will my mind be healed? I doubt it. It is so very strong my doubt; I deny myself the feeling that this is not okay and that I'm only 28 for Christ sake! This is new and scary and I don't know how long that feeling will last. So I push myself to be okay with it all, not deal with the fact that I am scared because I've faked being okay with this to every one: I don't want to let them down, let their opinion of me change, of not being so brave and courageous. I don't want to be a failure to them.

 I will occasionally have moments where it is too much. And learning how to deal with them is an uphill struggle, a steep learning curve. But that is okay. I need to hear it's okay.

But.. I wouldn't want to live without my denial or regret. I think those two emotions keep me fresh. Let me explain; if I didn't feel a small twinge of regret and what if and wondering why I was still in agony, I  would never have sought medical attention in August and my diseased colon would have killed me. There is no one set way to solve the problems that arise with IBD and every patient is different, even though we do follow certain patterns. If I didn't suffer with some sort of denial; I wouldn't be human. I would be a robot.

Sometimes you just need to be reassured that feeling those ‘negative’ emotions is okay. It's a part of life, a part of being a human and it's part of this recovery. It keeps you soft in world where it is so easy to be hard and cold.

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When Surgery Gives You Life

What Makes Me, Me

If anyone has asked me this last year or even a couple of months ago, I would have struggled to answer.

Was I definable by my relationship? My role as a friend, a daughter, a sister, a cousin? My likes and dislikes?

My invisible illness, even?

I don’t hide the fact that I have Crohn’s Disease, a form of Inflammatory Bowel Disease (IBD) and it has defined my life – both physically and mentally – for the five years since I was diagnosed. For the majority of that time I’ve been able to work and enjoy my life because medication was keeping my disease under control. But this year I needed to have surgery to remove a portion of my small bowel. This went to plan in May but three months later I needed to have more surgery; this time to remove my colon and give me an ileostomy. This was major abdominal surgery and would change my digestive system for life.

An ileostomy is where the small bowel is diverted through an opening in the abdomen. The opening is known as a stoma. A special bag is placed over the stoma to collect waste products that usually pass through the colon, rectum and anus. You wouldn’t necessarily know I had this unless I told you.

Getting used to this new chapter with my health makes me question what I am doing with my life and who I am.

A coping mechanism for dealing with my IBD was always to mock my disease and try to find the funny within my, at times, horrible situation. I connected with other IBD patients and shared stories with them; trying to find some new ‘normal’ in my life. I knew I was different but that made me all the more awesome for it. I’ve also met some great and inspirational people, most of whom I can now call friends. What came from this was that I now defined who I was by what I had. Sadly, despite the strong medications, my disease was still progressing. The medical profession and my own IBD team promoted surgery as a last resort; so when I finally got to that stage, I was scared. I couldn’t believe how soon this had come around. I was also angry; I was hoping for more years without needing to be cut open – cutting means that reoccurrence was higher, complications and lowered quality of life – why wasn’t my consultant doing more to keep me intact? This anger didn’t go away easily. Not until I was living in pain every day over the summer did they finally found out I now had a very diseased colon; it needed removing, and sooner rather than later.

I committed to my subtotal colectomy almost as soon as it was proposed to me.

Considering how I felt about surgery, this doesn’t make sense. But you know what else doesn’t make sense? Living in pain every day, being symptomatic and unable to sleep and eat for weeks on end. I was assured that this surgery would fix me. Removing my colon and giving me a permanent ileostomy seemed drastic but I just wanted to get better; I was willing to try anything. That was the pain talking. That surgery was the turning point for me. I was mentally prepared for it, the hospital physically prepared me for it – giving me a PICC line to feed me with TPN – how well I coped with it, how well I lived life with it, was all up to me.

For the most part I love my ileostomy. It’s weird to love a stoma but I truly do. I’m oddly fascinated with it and taking care of it is just a new challenge to me. I’ve never felt so well with Crohn’s in all my years with it. Yes, I am still having to have Crohn’s medication to keep my disease under control and maybe it’ll get me into remission, and yes I’ve had to modify my diet and keeping hydrated but again; that is just a new challenge. All the ostomates out there who live with ileostomies and colectomies – yes, there is a difference! – show me that life with a stoma isn’t all doom and gloom. I am not ashamed to have one, its saved me from months of prolonged agony!

Yes, it’s not the ‘normal’ set up for a digestive system but it works. I am still here, I am happy and I am no longer define myself as “Louise with the Crohn’s Disease”.

My disease has shaped my life, but my ileostomy has saved me from being overwhelmed by it. My ileostomy is giving me back my life, free of pain and anxiety. The array of activities I can still do with an ileostomy gives me hope that I can finally take back control of my life, even the ambitions and goals that Crohn’s Disease did try and take away from me. From swimming to horse riding, travelling without the fear of needing the loo, holding down a job, relocating, leading a healthy and fun life; things which I feared I wouldn’t be able to do before. Most importantly, I’m not scared to try new things now. I actively want to pursue things that give me life experience instead of being the person who sits on the side lines, scared to try, fearing people’s judgements and comments.

I am proud to have a bag of poo attached to my abdomen. It’s the best move I ever made. It’s made the old me see who I can be.

It’s made me, ME.

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